Granadilla celebra hace más de una década una Jornada sobre Enfermedades Raras, único municipio de Canarias

San Isidro acoge el XI Encuentro este jueves 25 de abril con la participación de numerosos colectivos y de FEDER.

Granadilla de Abona celebra su XI edición de la Jornada de Enfermedades Raras en Canarias este jueves 25 de abril, siendo el único municipio del Archipiélago organizando un foro de encuentro sobre estas patologías poco frecuentes desde hace más de una década. La iniciativa, organizada por la Concejalía de Salud que dirige María de la O Gaspar González, y la colaboración del Gobierno de Canarias y la Federación Española de Enfermedades Raras (FEDER), tiene como lema ‘Un desafío integral y global’. La cita será en el auditorio del Espacio Cívico de San Isidro (SIEC), de 9.30 a 14.30 horas, dándose cita diferentes colectivos, asociaciones, afectados y familiares, así como público en general, para trabajar en pro de la sensibilización y hacer un llamamiento sobre la importancia de la investigación y del trabajo en red.

El alcalde, José Domingo Regalado, explica que se trata de un encuentro que se ha convertido en un referente a nivel regional, y al que acuden un mayor número de colectivos relacionados con las enfermedades raras en cada edición, así como profesionales del ámbito sanitario que están interesados en unirse a la línea de trabajo desarrollada hasta la actualidad, siempre de la mano de las instituciones, asociaciones y profesionales, para entre todos aunar esfuerzos y recursos que ayuden al bienestar y calidad de vida de aquellas personas que sufren algún tipo de enfermedad poco frecuente.

María de la O Gaspar señala que esta Jornada está enfocada a servir de plataforma a todas las personas afectadas y sus familias para hacer visible sus necesidades e inquietudes, además de exponer lo que en Canarias se viene trabajando y desarrollando a nivel institucional, sanitario, social y asociativo en lo concerniente a patologías poco frecuentes. Agrega que, también, se centrarán en ofrecer información actualizada en cuanto a movimientos asociativos y líneas de actuación y de investigación. “Nos parece necesario sensibilizar a la sociedad, a la comunidad sanitaria y a todos los agentes que intervienen en el día a día de aquellas personas que padecen patologías poco frecuentes y sus familias, y mostrarles  referentes y recursos existentes a los que poder acudir para recibir sus servicios” apunta la edil.

Este encuentro contará con la colaboración de FEDER, que con su representación en el territorio canario, apoya este tipo de acciones que se organizan en el municipio, además de ofrecer el Servicio de Información y Orientación sobre Enfermedades Raras (SIO), de carácter gratuito y destinado a personas afectadas por una enfermedad rara y sus familiares, a las asociaciones, a estudiantes y a profesionales, entre otros.

Ponencias. Entre las ponencias figuran la titulada ‘Rara es mi enfermedad, no mi realidad’ por la representante del Colegio Oficial de Psicología de Tenerife, Cathaysa Fernández; ‘El cribado neonatal como herramienta de diagnóstico en enfermedades raras’ por Carmen Rosa Rodríguez Fernández-Oliva de Pediatría y la dirección general de programas asistenciales del SCS; ‘Pinceladas sobre la nueva Ley de Servicios Sociales de Canarias’ por la trabajadora social del Ayuntamiento de Granadilla de Abona, Nayra Santos Dumpiérrez, o ‘Síndrome de O´Sullivan-McLeod, abordaje desde la fisioterapia’ por Fabián Morales de la Asociación de Enfermedades Neuromusculares de Canarias (ASENECAN).

La segunda parte le tocará el turno a las asociaciones, que con su voz expondrán el desafío integral y global de las enfermedades raras, con Sergio Barrera Falcón, representante territorial de FEDER Islas Canarias. El colectivo ‘DEBRA Piel de Mariposa’, a través de Eugenia Méndez Hernández, hablará de la importancia de la implicación de las administraciones públicas. Otros colectivos participantes son la Asociación de Afectados por Acromatopsia y Monocromatismo de Conos Azules; la Asociación Española de Linfangioleiomiomatosis (AELAM); ‘Stop-Fa Ataxia de Friedreich’ y su representación en Canarias; la Fundación Canaria Oliver Mayor contra la Fibrosis Quística, y la Asociación de Arteritis de Takayasu y la Asociación de Discapacidad, Enfermedades Raras e Integración Social (Aderis). Se concluirá la jornada con un taller denominado ‘Contando contigo’.

 

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